ENDOMETRIOSIS: EVERYTHING YOU NEED TO KNOW
Endometriosis is an extremely common condition that affects 10% of women. Symptoms can start early in adolescence. A 2019 systematic review found 64% of symptomatic adolescents undergoing laparoscopy for pelvic pain were diagnosed with endometriosis.
WHAT IS ENDOMETRIOSIS?
Endometriosis is a chronic, inflammatory disease where uterine-like tissue grows outside of the uterus. Endometrosis is commonly found in the ovaries, fallopian tubes, lining of the pelvic cavity, uterosacral ligaments (ligaments that attach the uterus to the sacrum), bladder and rectum. Although rare, it is possible to find endometriosis on the diaphragm and the lungs. This tissue grows its own estrogen, which increases inflammation, which can cause more estrogen production. It’s a vicious cycle. These lesions can cause adhesions in the pelvis and other organs and lead to the many symptoms of endometriosis. (REF: Bulun SE. Endometriosis. N Engl J Med. 2009;360(3):268–279.)
Although endometriosis is not considered an autoimmune disease, it is autoimmune-like in its presentation. Women with endo are more likely than the average population to develop autoimmune diseases like Hashimoto’s, rheumatoid arthritis, and eczema.
symptoms of endometriosis
Endometriosis symptoms can vary greatly and can affect many bodily functions. And there are so many other symptoms than just painful periods. These symptoms include:
Painful periods
Abnormal cycles
Pain with sex
Bloating
Constipation
Gastrointestinal symptoms
Pelvic pain
Fatigue
Severe abdominal pain
Infertility
Symptoms can be constant and debilitating, or can come about sporadically and suddenly. This, coupled with the wide range of symptoms, makes endometriosis very tricky to diagnose.
how endometriosis is diagnosed
It takes women an average of 10 years to be diagnosed with endometriosis. Most women are commonly misdiagnosed with other issues such as IBS, interstitial cystitis, adenomyosis, and PCOS to name a few. Imaging such as pelvic ultrasounds or MRIs can sometimes identify endo, but more often than not, endometriosis does not show up on imaging, especially early on in the diagnostic process. The gold standard for diagnosing endometriosis is laparoscopic surgery during which a biopsy is taken from the surrounding tissues. Imaging can be used later on to help determine disease progression but until advancements are made, a laparoscopic biopsy is necessary for definitive diagnosis.
treatment options for endometriosis
There are a few different treatment options for endometriosis. They include:
Ablation surgery
Excision surgery (gold standard for treating endo)
Medications (hormonal therapy/birth control)
Pelvic floor physical therapy (managing pain and symptoms)
ablation surgery
Ablation is the burning or cauterizing of the surface of endometriosis lesions. While ablation may provide temporary pain relief, the recurrence rate of symptoms is high because it does not reach deep into the lesions of the endometriosis, which can leave endometriosis behind. No specialist training is required to perform an ablation, meaning many primary OBGYNs can perform it. However, this is not ideal when treating endometriosis.
excision surgery
Excision, which is the gold standard for treating endometriosis, includes cutting out the entire endo lesion, including below the surface of it. This allows for histological confirmation of endometriosis and can remove deeper portions of the disease. Excision has higher success rates in reducing period pain, pelvic pain, and pain with bowel movements. Excision surgery also lowers the need for repeat surgeries since it removes the entire lesion, not just the surface of it.
LONG TERM OUTCOMES WITH PROPER EXCISION
When treated properly with excision, many women can experience long term relief from endometriosis symptoms. Excision surgery can decrease pelvic pain, painful periods, pain with sex, and bowel and bladder symptoms, with relief for up to 5 years post surgery.
J. Pundir, MD, et al., “Laparoscopic Excision Versus Ablation for Endometriosis-Associated Pain: An Updated Systematic Review and Meta-analysis,” Journal of Minimally Invasive Gynecology, vol. 24, no. 5 (July/August 2017)
A 2020 review in Journal of Minimally Invasive Gynecology concluded that excision leads to better symptom control and fewer repeat surgeries compared to ablation (Marziali et al., 2020).
HOW TO FIND AN EXCISION SPECIALIST
Not all gyn surgeons are created equal, especially when it comes to endometriosis. It is IMPERATIVE to find a skilled excision specialist who has extensive training in endometriosis. An excision specialist should have advanced knowledge in pelvic anatomy and the ability to remove advanced disease from pelvic and other organs. These surgeons should also understand that endo is a chronic, inflammatory disease that requires taking a multifactorial approach to treatment, not just surgery. Two excision specialists that we recommend in the greater Los Angeles area are Dr. Steven Vasilev (this is who performed our very own Dr. Rachael’s endo excision) https://gynecologiconcologyinstitute.com/about/dr-steven-vasilev-md and Dr. Iris Orbuch https://www.lagyndr.com/
Trying to find a surgeon who is skilled in endo excision can be challenging, so we have composed a list of questions that you can ask your surgeon. The number one thing we recommend is to make sure you confirm 100 times that they perform EXCISION and not ablation.
medications
Medication options for endo related pain include hormonal birth control, progestins, GnRH agonists/antagonists, and aromatase inhibitors. These medications work by suppressing estrogen, which fuels endometrial lesion activity. They can reduce inflammation, bleeding, and pain associated with the condition.
However, these medications do not remove or eliminate endometriosis lesions, and they do not prevent the disease from progressing or recurring once treatment stops. While they might help suppress pain for a little, they don’t address deep-infiltrating or fibrotic disease, and some patients continue to experience pain despite medication.
Why Pelvic Floor Physical Therapy Is an Important Resource for Endometriosis
Endometriosis affects the pelvic floor muscles. When you have pain, especially in the pelvic region, your muscles’ response is to tense in a protective response from pain. However, this can just create more pain. Enter pelvic floor physical therapy. While pelvic floor PT cannot cure endometriosis, it can help with pain and symptom management. Releasing the pelvic floor muscles can promote relaxation and help decrease pain. A common symptom of endo is abdominal pain, and visceral mobilization of the abdominal organs can also help with pain management.
Seeing a pelvic floor physical therapist who is knowledgeable about endometriosis symptoms and treatment options can be extremely beneficial before moving on to more invasive treatment options. However, pelvic floor PT will not cure endometriosis. It helps address muscle and nerve responses to pain and manage symptoms of endometriosis.
In their book Beating Endo, Dr. Iris Kerin Orbuch and Dr. Amy Stein provide a questionnaire for helping you find the right pelvic floor physical therapist for endometriosis.
Why Pelvic Floor Physical Therapy is Vital After Endometriosis Surgery
While skilled excision surgery should remove endometriosis, there can be lingering symptoms that can be addressed with pelvic floor physical therapy. Many people with endometriosis continue to experience pain or pelvic floor dysfunction after surgery due to long-standing muscle guarding, nerve sensitization, and changes in movement patterns. Pelvic floor physical therapy is vital post excision surgery to reduce muscle guarding, desensitize nerves, address scar tissue in the abdomen and pelvis, and promote normal movement patterns. This is done through a combination of manual therapy, visceral mobilization, nervous system down training, pelvic floor relaxation, core strengthening, and more.
Red light Therapy for Endometriosis
Red Light and Near Infrared Light therapy stimulates your body’s natural healing process at the cellular level – there is increased ATP (cellular energy) production, protein synthesis, blood flow, oxygenation of tissues, and reduced inflammation and protection. Red light therapy can be an effective tool for decreasing endometriosis related pain. It can also help accelerate wound and scar healing after surgery.
Endometriosis and pregnancy
Endometriosis and infertility have gotten a reputation as going hand in hand, and there are a lot of overlaps between the two. An endometriosis diagnosis does not mean you will never be able to conceive. Endo can cause complications and hardships, but with disease management and a good team, pregnancy is still viable.
A lot of women with endometriosis experience difficulties with pregnancy and fertility. It is estimated that 40% of what medical professionals call “unexplained infertility” is actually caused by endometriosis. If the right follow up questions are asked, women have a chance at explaining the infertility with an endo diagnosis.
There are two main ways that endo can affect fertility.
Inflammation
The general inflammation that occurs in the pelvic organs can block the egg from ever entering the fallopian tube or block the sperm from reaching the egg. If fertilization does happen, adhering to a uterine wall that is so inflamed and filled with the chemical offset of endo can be extremely difficult. This leads to failure to become pregnant or in some cases, miscarriage.Physical Difficulties
The lesions themselves, as well as scarring, can create anatomical challenges for pregnancy. The lesions can cause damage to the reproductive organs, such as the fallopian tubes and uterus.
Because of these reasons, many women with endo turn to in vitro fertilization. Some women still experience pregnancy failure with IVF because implantation is hard to achieve with the inflammation. Alternatively, after an excision surgery, many women have been documented as experiencing spontaneous pregnancy because the egg and sperm can finally meet and implant safely.
Acupuncture can also help because it helps with both stress management and increasing blood flow to the pelvic organs which can boost fertility for some women.
the financial element
There is a financial component to treating endometriosis—one that can’t be ignored. Whether you're exploring care for yourself, your daughter, or a friend, it’s important to understand the potential costs involved.
Many providers who specialize in endometriosis care are out-of-network, meaning you’ll often need to pay upfront for their services. However, some will support you in submitting claims for reimbursement or help you apply for a gap exception through your insurance, allowing you to access care from an out-of-network provider as if they were in-network.
Why are so many endo specialists out-of-network? In short: time and quality. Endometriosis is a highly complex condition that can’t be adequately addressed in a rushed 15-minute visit. These providers often remain out-of-network so they can spend the time necessary to truly understand and treat your case.
That said, high prices don’t always equal high quality. Just because someone charges more doesn’t mean they’re the best fit for you. Do your research. Ask questions. Look into the training and experience of every member of your care team. Because not investing upfront in the right care often means your body—and your quality of life—pays the price in the long run.
final thoughts
Navigating endometriosis can feel physically, emotionally, and financially overwhelming. But knowledge is power, and the more informed you are, the better equipped you’ll be to advocate for yourself or your loved one. From understanding your treatment options to building a skilled and supportive care team, every step you take is an investment in long-term health and quality of life.
If you're looking for guidance or support, our team at Cappuccino Physical Therapy is here to help. We work closely with people navigating endometriosis and can help you build a care plan that makes sense for your body and your goals. Contact us to learn more or schedule an evaluation.
Resources
https://www.endofound.org/endometriosis
https://www.ajog.org/article/S0002-9378(19)30002-X/fulltext
Martin Healey, et al., “To Excise or Ablate Endometriosis? A Prospective, Randomized, Double-Blinded Trial After 5-Year Follow-Up,” Journal of Minimally Invasive Gynecology, vol. 21 (2014):999-1004
J. Pundir, MD, et al., “Laparoscopic Excision Versus Ablation for Endometriosis-Associated Pain: An Updated Systematic Review and Meta-analysis,” Journal of Minimally Invasive Gynecology, vol. 24, no. 5 (July/August 2017)
A 2020 review in Journal of Minimally Invasive Gynecology concluded that excision leads to better symptom control and fewer repeat surgeries compared to ablation (Marziali et al., 2020).
The Center for Endometriosis Care and other expert centers emphasize that excision is the gold standard for advanced or recurrent disease (Seckin & Taylor, 2017)
ACOG Practice Bulletin No. 114. (2010). Management of Endometriosis. Obstetrics & Gynecology, 116(1), 223–236.
Dunselman GAJ, et al. (2014). ESHRE guideline: management of women with endometriosis. Human Reproduction, 29(3), 400–412. https://doi.org/10.1093/humrep/det457
Zondervan KT, Becker CM, Missmer SA. (2020). Endometriosis. New England Journal of Medicine, 382, 1244–1256. https://doi.org/10.1056/NEJMra1810764
